I am Red. I am a Survivor. This is my journey.

#radiation

Today while getting ready I did not have to take an extra 20ish minutes of mine and my husband’s time. No covering in silvadene, xeroform, bandages and netting. Just a few minutes of cleaning the one wound with saline, applying the Santyl and covering with a saline soaked gauze and a bandage. Sounds like a lot but I don’t think the entire process took 5 minutes – much less than before!

I’ll have to change the saline in about 3 – 4 hours but it’s a much easier process. I won’t pretend it doesn’t hurt because it’s pretty painful. I would compare it to taking a shower when my chest was all open wounds. It feels like that on the open wound. Hopefully this causes it to heal quickly!

Happy Wednesday, friends! Try to find a way to spread some love today. 💚

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And we’re back! Whew, it’s been a crazy season of travel and despite the amazing times that we have had, I am relieved to be home. Just one more local center visit (well, 2 hours local) and then we are done – hopefully for a while!

So after talking with my oncologist, I attempted to take an extra week off from Xeloda to help heal a little better from radiation but also allow my blood counts and other side effects to calm down a bit. My skin started to heal a little faster from radiation, which is super exciting. My feet started peeling like crazy during my time off but thankfully aren’t painful just yet.

Unfortunately, during my bath last Tuesday night I noticed what appears to be breast cancer coming back on my skin. It is on my left and center belly, under the radiated area. I chatted with the doctor Wednesday morning and after a few pictures and discussion of healing for 2 extra days versus starting Xeloda a little sooner than discussed, we decided to start Xeloda on Wednesday. We did not do a biopsy but we are pretty confident that it is cancer. Hopefully it was just a few days too long that the Xeloda took a break and it is actually still working. We are praying hard for that!! We know the CT scan before showed awesome progress! The radiation oncologist (RO) said today that it likely would not be gone by now. The Xeloda attacks the tumor directly, which absorbs the Xeloda, turns it bright red, inflamed and quite angry. That is pretty much what’s happening now so I am optimistic!

My radiation burns are still there. Some parts are quite itchy where there isn’t raw skin. I do have lots of raw skin still but it’s healing…slowly but surely. I’m just sick of bandages and 3 times a day changes. But it’s a small price to pay!

And on that note, because I like to keep things interesting, I have been having some pretty intense pain in an area that was double radiated on my left side. It’s on the end / center of my chest, by the my expander. It’s not rib pain but expander or scar pain. I’ve had it for 2 or 3 weeks now and it’s more painful than the radiation burns, if you can believe that. My RO thought it was odd for sure and last Thursday, my scar opened up. It’s been opening a little more over the last week and she wanted me to see my plastic surgeon (PS) to check it out immediately, since she had never seen it happen before. Especially given my age and how well I am healing, it’s surprising that it would open suddenly. We are thinking it may have opened as a result of starting the Xeloda again (rad-intensifier). So I also headed to the PS today and after checking it out, he was relieved that it appears to be a superficial skin opening. Everything is healing really well around it, the new skin growth is there and thankfully the expander is not coming through! The skin underneath looks great and intact. I know what to look for and the pain will hopefully get better with time.

We also discussed my next surgery. It was originally slated for 5 – 6 months after stopping radiation and depending on my healing. After chatting about this in more detail, it’s decided that my reconstruction attempt should be as soon as possible. I cannot have MRIs currently because of the tissue expanders and that in itself is concerning. They show a lot more than CT scans, especially in my brain, so it is incredibly important to have those sooner rather than later. Typically, the PS waits to help eliminate scar tissue and allow more time for healing. In my case, the MRI outweighs the risks of waiting.

So then comes the question of expansion. We reduced my left for radiation down to 300 (my right is still at 620). I cannot express my relief that he didn’t want to remove fluid to assist my scar today! There is a lot of concern around whether or not I will even be able to expand on the left side. Basically, my skin healed too well around the expander. It tightened up nicely and allowed the scar tissue to form around the expander. The risk is that when we go to expand, I may – quite literally – expand inward. We will start much lower than before and see how it goes. There is the potential risk that instead of expanding outward, I expand inward towards my ribs. We don’t want that. If that happens, we obviously stop and stay as is. We will cross that bridge when it comes. Frankly, I am fine with anything there at this point. I’d just like my chest bigger than my belly! 😉

We are optimistic that I will heal without difficulty but there is the possibility of a second surgery to remove my implants if I do not heal properly. Again, we will cross that bridge when it comes and hope for the best. I’ll be glad to be rid of these annoying and tight tissue expanders!

In terms of timing, my skin will hopefully be healed completely from radiation within a month. We will then attempt expansion and almost immediately after expansion attempts then we will have surgery. Much sooner than expected!

So those are my updates for today. As a random side note, I am so blessed with my doctors. At every single visit, they sit down and chat with me. They pull up a chair or offer a hug and they want to know about…life. Not just cancer but the wedding we were just in or how Jacob is doing in school. They genuinely care about us – and I am just so grateful for that!

Happy Wednesday, friends! Continue to spread that love around! 💚

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Happy Sunday, friends! Did anyone else see that gorgeous full moon last night?! My goodness, I thought I could reach out and touch it – it was incredible. We were driving home when it was rising and Jacob was in awe. The whole car ride he was watching for it behind the trees and buildings, asking “where moon go?” when it disappeared and yelling “there it is!” everytime he saw it. He even woke up talking about it this morning!

I’m just over a week out of radiation treatment and I’m hopeful that I’ll start to feel better now. Dare I say, I feel as though the pain is improving slightly, though looking at pictures there are parts that are more red than before. I don’t think I curse quite as much when I’m getting bandaged up though, so that’s good news! 😉 I’m anxious to stop with the bandages since they are time consuming, uncomfortable and warm…but almost through it!

When was the last time you bathed instead of showering? I can’t remember the last time I did! The last few days, I’ve started bathing to help with the radiation burn. It’s not the greatest thing in the world but it is significantly better than showering. It must be the combination of the water falling vs me being able to take my time getting the extra lotion off my skin with a washcloth. I am glad to have found a happy medium!

I’m over a week into my 3rd cycle of Xeloda and so far, I feel good from that. My feet are lotioned up regularly and it’s causing some major dry skin in general but other than that, I only have fatigue so that’s great news. I’m hoping my feet don’t start to hurt until the end of this cycle, when it’s time to take a break again anyway. The combination of everything right now is causing me to make up for lost sleep, for sure. I feel as though I spend my days sleeping but I remind myself this is the time that my body needs it. I’m almost recovered from radiation and then hopefully it’ll just be chemo for a LONG time!

Our visit to Memorial Sloan Kettering is this week and I am super excited about it! After the last 2 visits, I think we have a better handle on what questions we have and need to understand, as well as a better handle on how I’m responding to treatment. I’m anxious – in a good way – for that visit…and for some cooler weather! 😉

This is going to be a great week, friends. I feel it in my heart. Spread the love and enjoy this beautiful day that we have all been gifted with!! 💚

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Whenever Jacob finishes something – dinner, a puzzle, a book – he says “all done!” emphatically and waves his little hands in the air. It’s incredibly adorable and I find myself mirroring this habit of his back to him.

At radiation each morning when the whirl of the machine shuts off and the “Beam Off” light flickers dark, I can’t help but smile and think “all done!” Even if just for that moment or that day, my treatment is over.

Today, Joe & I ventured out to see the radiation oncologist and discuss my CT scan yesterday. My scans showed that my cancer has “essentially vanished”. Say, what?! We are stopping the standard radiation treatment going forward, especially with my upcoming travel – yay! It is undecided whether or not to do the boost treatments to my lymph nodes and chest but we have time to figure that out. Even the areas outside of the radiation field are disappearing.

I cannot tell you how much I needed that news today. My chest is certainly worse for wear and this week has been hard. I basically have no top layers of skin in the radiated areas, which is why showering and lotioning is so ridiculously painful. This week is supposed to be the worst and I will begin to heal hopefully as soon as this weekend. I am praying for that healing!!

I am not considered NED currently, as I haven’t had full body scans to confirm anything and my CT was of my neck and chest only. And I will never truly be cancer-free. The radiation oncologist agreed entirely, and stressed the importance of, visiting the different centers that we have been going to and that we have planned. At some point, the Xeloda will stop working and I will need to consider next steps. One of the things that I am learning at the different centers is that I do have options – including and excluding clinical trials. There are things that I can do as “standard treatments” before a trial or I can consider the trials that are available. Each center has been giving me the trial names to research in anticipation of the day that they are needed. And research is exploring more options every day.

So yes, I am a stage 4 metastatic breast cancer patient. And yes, this has been one of the hardest weeks of my life. But hearing that my cancer is not appearing on scans and that this pain has a purpose makes everything worthwhile.

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I started this post with a story about this morning but honestly, I have no words. My radiation oncologist just called to discuss the CT I had this morning of my neck and chest. It looks awesome.

Awesome. That is the word she used. More than once.

We’ll discuss more when I see her tomorrow but basically, the areas where the cancer was infiltrating are melting away. Even the portions where she is not radiating, the Xeloda is doing its job and attacking it head on.

I can’t even type this without crying. My scans look awesome.

Awesome.

It’s an AWESOME day, my friends. We continue to pray, hope and love!

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Showering in the morning is rough. I have to remove the leftover lotion from my skin but everything is incredibly tender. Not to mention it itches like crazy. Like, the worst mosquito bite of your life, crazy. And yet if you itch, you are instantly in pain because everything hurts. So no itching despite how bad it itches. Ouch.

Imagine the worst sunburn that you have ever had. Now imagine that you have road rash on top of that sunburn. You know everything is red, peeling, open, trying to heal, etc. It dries out quickly so you try to keep it lotioned up as much as possible. You have to be careful moving and remember that it hurts to move a certain way because of the burned area. That’s about what this radiation feels like. I’m getting a larger dose than normal and I’m on Xeloda, which magnifies radiation too. So it’s likely worse for me now than most. It’s definitely stronger and harder than my first round, and I did that for 6 weeks.

It takes me at least twice as long as a normal shower just to wash my radiated areas. I typically don’t take pain medicine until after because I want to get close to the timing for radiation. The radiation itself doesn’t hurt, but my skin is dry and lifting my right arm up is quite painful. So needless to say, showering hurts. Toweling off is just as fun because everything is sore and I have to pat dry but be super slow and careful in the meantime. It’s a long yet necessary process.

I had the weekend off from radiation and I know the side effects lag behind a bit so though I expect things to get worse, I was super exciting that nothing bled in the shower this morning. Silly, I know, but this was a big deal for me and I was excited to tell the technicians at radiation that things are healing despite continued treatment. As I changed into the gown at the center, one of my wounds opened and immediately started to bleed. Dang it, there goes my excitement! When the technician came in to get me, I joked with her about how excited I was to tell her that I wasn’t bleeding and that it had just started. Well, let’s remember that everything happens for a reason, Meg.

The technician didn’t like the bleeding and called in the doctor to take a look. Of course, it’s to be expected and my skin looks rough but like it should considering all that it’s been through. After checking me out, the doctor asked if I wanted a break from treatment. My eyes lit up. Um…yes?!

We talked at length about my upcoming travel, the 3 remaining days plus boost and my great response to treatment so far. She shared that sometimes when people react positively at this point, she stops treatment entirely and other times she finishes it out if the patient is up for it. I, of course, shared that I am up for whatever she recommends but the break is certainly welcomed.

So, we decided to take a few days off. Though my skin will look a little worse in the meantime, it’ll give me a break from the effects of treatment and a few extra days of rest. In the meantime, I’ll have a CT of my neck and chest to see how things are progressing with treatment (particularly my lymph nodes) and I’ll see her again on Thursday morning (post-CT) to discuss what the treatment path will be.

Although part of me wants to push through this and get the last 3 done, I am glad for the break. It is certainly welcomed! I am anxious for the CT scan too, as I anticipate it to be good news all around…though time will tell!

That being said, I am going to lotion up, apply my super cool netting and nap, nap, nap. It’s a good day, friends. And your prayers for this week are being answered already!

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One of the awesome ladies that follow my blog mentioned that she used a mesh netting after radiation everyday. I asked about it this week and my goodness, it’s amazing! I’ve been wrapping myself in multiple ace bandages that wiggle and come undone. The netting is one piece that Joe cut holes into for my arms so that it holds the bandages up by my neck. I spend my days and my nights like this. I used to take a few hours off from the netting and just use lotion but unfortunately the open wounds didn’t like that so much, so it’s netting all the time now. It works wonders though!

I’m learning to make sure I take pain medicine before applying the lotions and such. I am so ridiculously blessed to have Joe help me with everything and for having him in my life. The process itself takes 20 – 30 minutes a pop and frankly, there are usually tears and some curse words from me. God bless that man for dealing with me at my worst. I feel tremendously better once everything is applied, it’s just a matter of getting to that point.

So this is me now. I have enjoyed my two days off but I am ready to power through the 3 remaining treatments and discuss the timing in the last 5. And frankly, I hope I never have to deal with this again! NED, anyone? 😉

Enjoy this day, my friends. I plan to rest and prepare for the week ahead! 💚